Archived: WMA Statement on Genetic Counseling and Genetic Engineering

Adopted by the 39th World Medical Assembly Madrid, Spain, October 1987
and rescinded at the WMA General Assembly, Santiago 2005

The World Medical Association has adopted the following statement to assist physicians with the ethical and professional issues that arise from scientific advances in the field of genetics.

GENETIC COUNSELING

There are two primary areas of genetic diagnosis:

1. screening or evaluating prospective parents before conception for genetic disease to predict the likelihood of conceiving an affected child; and
2. in utero testing after conception, such as ultrasonography, amniocentesis, and fetoscopy, to determine the condition of the fetus.
   Physicians engaged in genetic counseling are ethically obligated to provide prospective parents with the basis for an informed decision for childbearing. In providing information to couples who choose to reproduce, physicians should adhere to the ethical requirements and the professional standards for medical practice in the community, as established by WMA National Medical Association and other appropriate medical organizations.

Technological developments have improved the accuracy of predicting and detecting genetic disorders. Where a genetic defect is found in the fetus, the prospective parents may, or may not, request an abortion. Physicians, for personal moral reasons may, or may not, oppose the provision of contraception, sterilization or abortion as part of the genetic counseling services. Whether they advocate or oppose providing such services, physicians should avoid the imposition of their personal moral values and the substitution of their own moral judgment for that of the prospective parents.

Physicians who consider contraception, sterilization and abortion to be in conflict with their moral values and conscience may choose not to provide genetic services. However, in appropriate circumstances, the physician is nevertheless obligated to alert prospective parents that a potential genetic problem does exist, and that the patient should seek medical genetic counseling from a qualified specialist.

GENETIC ENGINEERING

As genetic engineering research develops, appropriate guidance must be provided by the scientific community, medicine, industry, government and the public to regulate such research.

If and when gene replacement with Normal DNA becomes a practical reality for the treatment of human disorders, the World Medical Association urges that the following factors be considered:

1. If procedures are performed in research setting, reference should be made to the World Medical Association Declaration of Helsinki on biomedical research involving human subjects.
2. If procedures are performed in research setting, reference should be made to the World Medical Association Declaration of Helsinki on biomedical research involving human subjects.
3. Full discussion of the proposed procedure with the patient must be required. The consent of the patient or his legal representative must be informed, voluntary, and written.
4. There must be no hazardous or other unwanted virus on the viral DNA containing the replacement or corrective gene.
5. The inserted DNA must function under normal control within the recipient cell to prevent metabolic damage that could damage healthy tissue and the patient.
6. The effectiveness of the gene therapy should be evaluated as best as possible. This will include determination of the natural history of the disease and follow-up examination of subsequent generations.
7. Such procedures should be undertaken in the future only after careful evaluation of the availability and effectiveness of other possible therapy. If simpler and safer treatment is available, it should be pursued.
8. These considerations should be reviewed, as appropriate, as procedures and scientific information are developed in the future.